Hello to everyone. I have really enjoyed reading and learning on your site. I have been dealing with sx of lupus for about 6 years now, I am 35. I have 3 beautiful (okay, I am biased) children: Gabe 8 yrs, Eli 6 yrs, and Haven 6 months.
I have had lower back issues for 7 years now, started soon after pregnancy with my oldest child. Dx with DDD and spinal arthritis. Soon thereafter, dx with chronic hip and shoulder bursitis. Saw a rheumy at that time, and he was very dismissive of my pain. I did have a positive RF factor at that time, but everything else was normal. Then I was sent to the pain clinic for injections. Which only made things worse. Tried it three times, to no avail.
Started having skin symptoms about 3 years ago. Noticed I had some darker pigmentation on my arms that didn't go away. Like splotches on my upper arms. Headaches, fatigue, muscle aches, are just normal for me at this point. 3 years ago, got lesions on my face and on my arm that lasted for about 3 months. Had them again about a year and a half ago. And this spring, after Haven was born, they came back in full force and haven't left. I had assumed it was some sort of acne the two times before, but now I felt it must be something else. Finally went to see a Derm and she did a bx that was inconclusive. Just had two more bx's done this week, this time on a new lesion. Should have results next week.
I can't be in the sun for more than five mins during the day, I literally sting and blister if I do. And it knocks me out the next day or two.
Been dealing with the limits of pain and fatigue for about 6 years now, always thinking it was just arthritis. It's a bit of a new game to think I have Lupus. Although, it does explain so many of my symptoms. My derm is convinced I have discoid lesions at the least, and thinks I may have SLE.
I'll let ya know how it turns out.
Strange, but I think my writing tonight is very stunted and unemotional. Which isn't my normal "voice". Maybe I am just tired??
I am so glad to have found this site, and am looking forward to getting to know you all.
God Bless!
Deb (bunnie)

debbie-b

08-21-2009, 05:38 AM

Hi Deb,

First I want to say, welcome to WHL, your new little family.
You will find alot of people here, that are in the same boat as you are, without a Dx. I hope you will find out soon and get the meds you need. Until then, you can always count on your new friends here to help you out and give you advise, if you need it.
BTW, I am Debbie, I was dx with Lupus SLE, RA and Fibro, almost three years ago.

Debbie

Saysusie

08-21-2009, 11:34 AM

Hello and Welcome Deb;
Many of us can understand and empathize with what you are going through. I just don't understand dismissive rheumatologists..I really don't get that at all.
At any rate, if you are dealing with an auto-immune issue, and if that issue is Lupus, it is not uncommon for flare-ups to occur during pregnancy and especially after child birth. You skin manifestations do sound like Lupus Lesions as well as a form on Lupus Rash. Often, you will be prescribed Plaquenil to help alleviate the lesions and rashes. Plaquenil is a cumulative drug, so it takes weeks to months before noticeable improvement is seen. But once it does start working, the results are usually very good.
Hopefully, your biopsy will give some definite answers to what is causing your skin issues. If it is an auto-immune problem, perhaps you can talk to your doctor about starting Plaquenil in order to address those issues.
Whatever the case, we are all here to help you as much as we can and to give you information and answers. Welcome to our family, I am so glad that you are here.

Peace and Blessings
Namaste
Saysusie

mountaindreamer

08-21-2009, 12:27 PM

hi bunnie,

welcome to our "family of the sky"....i am so glad that you found us. I found this forum shortly after my diagnosis when i was so frightened and confused....the knowledge and compassion that i found within the members here helped me learn how to live with lupus, and helped me find the calmness needed to keep living my life.

You are such a busy lady with those precious children....i know there is a lot of love and laughter in your home, and i believe this is the best medicine for dealing with such a scary illness.

As saysusie said, there are medications that really help us, and we are all here to help you as you decide which options to try, and to help you learn to be your best advocate.